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RESEARC H Open Access
Health-related quality of life changes of children
and adolescents with chronic disease after
participation in therapeutic recreation
camping program
Andrea Békési
1*
, Szabolcs Török
2
, Gyöngyi Kökönyei
3,4
, Ildikó Bokrétás
1
, Annamária Szentes
5
, Gábor Telepóczki
1
and The European KIDSCREEN Group
6
Abstract
Background: The principals of therapeutic recreation underpin a camping program for children and adolescents
living with chronic disease. This study aimed to evaluate the campers’ health-related quality of life (HRQoL) before
and after the program.
Method: We used the Hungarian version of Kidscreen -52 questionnaire to assess HRQoL. The study sample
(n = 115) consisted of children and adolescents aged 10-18 (Mean Age: 13,34; SD: 2,20) collected two months
before and two months after camp with the following illnesses: oncology patients (n = 32), diabetes (n = 55) and
juvenile immune arthritis (JIA) (n = 28). Repeated measures of multivariate analysis of variance (MANOVA) evaluated
pre and post camp changes. We used the Reliable Change Index (RCI) to calculate all the 10 subscales of clinically
significant changes.
Results: The Self-perception subscale showed significant positive change from pre camp to post camp with small
effect size. Autonomy scores sho wed time related decline as well as significant time and age group interaction:

children under 14 years of age showed a significant moderate effect size decrease on the Autonomy subscale.
32 children (27.8%) showed clinically significant improvement (RCI > 1.96) at least on one subscale. All positive
changes were independent of the type of disease, age, gender, and previous camp experience.
Conclusion: The therapeutic recreation camping program had a positive impact on HRQoL of children and
adolescents living with cancer, diabetes mellitus and JIA. The experience enhanced their self-perception in all age
groups and reduced the autonomy of children under 14 years of age. This study is an innovative use of the
KIDSCREEN-52 questionnaire to measure the outcome effectiveness of a psychosocial rehabilitation program and to
assess and compare HRQoL of children living with different chronic diseases.
Background
Chronic conditions are challenging at any age, but this
maybeespeciallytrueduringchildhoodandadoles-
cence. Children with chronic diseases may find them-
selves restricted by and dependent on parents for
practical and emotional support [1]. Overanxious par-
ents may attempt to further restrict their autonomy.
The children can be inadvertently excluded from their
peers and siblings by concerns about the illness, the fear
of pain and the need for continual monitoring [2].
Chronic disease during childhood can also result in
more frequent depressive moods and other negative
emot ions, together with lower satisfaction of life, school
performance, self-esteem and self concept [3-8].
Young adults with different chronic conditions are at
high risk for psychological symptoms that are aggravated
by restricted activity days, unpredictability of symptoms,
poor prognosis, the presence of more than one
* Correspondence:
1
Bátor Tábor Foundation, Budapest, Hungary
Full list of author information is available at the end of the article

Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>© 2011 Békési et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Common s
Attribution License ( which permits unrestri cted use, distribution, and reproduction in
any medium, provided the original work is properly cited.
condition, and the presence of hearing and speech pro-
blems [9].
Social support plays an important role in the adjust-
ment of children living with chronic diseases [10] espe-
cially from classmates and parents [11,12]. Increased
social support is associated with better psychosocial
adjustment [13] and illness management [14].
General self-esteem seems to be an important recon-
ciling factor be tween social support and adjustment [15]
as well as mediating the relationship between perceived
physical appearance and psychological distress (depres-
sive mood) in newly diagnosed pediatric cancer patients
[16]. Emotional and social consequences of chronic ill-
ness are dependent on percei ved physical appearance
[17]. During adolescence peer belonging and social
acceptance have a high priority. In some diseases - e.g.
in JIA or in cancer - visible signs of the disease may
lead to negative evaluation and social exclusion.
These results suggest that evaluating and monitoring
physical functioning in chronically ill children is impor-
tant but not sufficient. Living with a chronic condition
profoundly affects various aspects of life, and changes
the everyday biological, psychological and social func-
tions [18] resulting in impaired HRQoL compared to
that of healthy peers.
HRQoL can be an important outcome measure in

understanding the impact of chronic illness, and can
complement objective clinical measures. HRQoL issues
have become more salient and are now a fundamental
focus of comprehensive healthcare [19]. The World
Health Organisation (WHO) defines quality of life as
“an individual’s perception of their position in life in the
context of the culture and value systems in which they
live and in relation to their goals, expectations, values
and concerns”[20].
HRQoL can be conceptualized as a multidimensional
construct which describes physical, psychological and
social functioning. Impaired HRQoL was found in chil-
dren and adolescents with several chronic conditions,
e.g. diabetes, gastrointestinal diseases, cardiac condi-
tions, asthma, obesity, end stage renal disease, psychia-
tric disorders, cancer, rheumatologic conditions, and
cerebral palsy [19]. In a Hungarian study lower scores
in the physical functioning component of HRQoL were
detected in children 5-18 years of age at a paediatric
outpatient cardiology unit compared to healthy con-
trols [21].
Theaimofthepresentedresearch is to investigate
outcome effectiveness of a therapeutic recreation sum-
mer camp program (the Bátor Tábor program) for chil-
dren and adolescents living with cancer, diabetes and
JIA regarding the expected changes in HRQoL.
The goals of camping programs for children with
chronic illnesses tend to be broad enough to address
some of the needs common to many of these chil-
dren, whilst accommodating individual differences.

The range of goals generally includes: providing
children with a fun-filled, age appropriate experience
where they can acquire activity-related skills; encoura-
ging children to develop a self-sufficient attitude;
enhancing self-esteem; providing opportunities for a
sense of mastery and efficacy in peer relationships;
and helping children learn about their illness either
through formal education, or informal peer interac-
tion [22].
These camping pr ograms appear to be effective. An
overall conclusion is difficult to state due to variations
in design, heterogeneity of subjects, and differences in
the definition of camp programs. There has been an
increasing demand for accountability and outcome-dri-
ven, cost-effective models of care [23], but t here is a
theoretical deficit on measurable positive outcomes of
these camping programs. Camp researchers continue to
strive to provide empir ical evidence that disease specific
camps are beneficial for children with chronic illnesses.
There are reports on the effectiveness of such camps on
quality of life, besides medical and physiological impacts
[24-27].
We tested the hypothesis that the therapeutic recrea-
tion camping program of Bátor Tábor has a detectable
positive impact on the self-re ported physical, psycholo-
gical, emotional and social aspects of well-being of chil-
dren and adolescents; which could be detected by a time
related positive change in HRQoL. A generic measure of
HRQoL was chosen which al lows for assessment of ado-
lescents with different diseases.

Methods
Design of the study
We designed repeated within-subject measures short-
term follow-up. Me asures were administered at two
separate time periods: 2 months before the camp started
("pre camp"; Time 1); and 2 m onths after camp ("post
camp"; Time 2). The main objective of this prospective
pre-post study was to evaluate the impact of the Bátor
Tábor program on HRQoL of children and adolescents
living with chronic diseases.
Setting
The Bátor Tábor (Camp of Courage) Foundation was
founded in 2001. It is a non-profit organization operat-
ing as the Central-Eastern-European Center for Thera-
peutic Recreation, providing cam ping programs for
children and adolescents living with chronic illnesses.
Campers attend the camp program free of charge. The
campsite of Bátor Tábor is situated in a pleasant coun-
tryside environment in Hungary (for further information
see: ).
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>Page 2 of 10
Bátor Tábor is a member of the Association of Hole in
the Wall Camps launched more than 20 years ago by
the Academy Award winning actor, Paul Newman [28].
At present the international camp association has 11
members all over the world [29].
The adventure-based program of the camp addresses
the needs of chronically ill children and adolescents on
several levels [30], and treats participants with a method

called therapeutic recreation [22,31]. There is a sophisti-
cated medical centre on site, which stays in the bac k-
ground away from the activities and the fun [32].
During the day there are opportunities to acquire new
skills or improve performance of traditional camping
skills such as archery, horseback riding, boating, arts
and crafts, team games, and other sports. In the eve-
nings there are “all camp” activities including campfire,
beach party, casino, and talent show. Each activity offers
a kind of a challenge, often confronting the campers
with an unknown situation, which e ncourages them to
step over their real or imagined limitati ons, and try
themselves out in new si tuations. The completion of the
challenges is always accompanied by success and recog-
nition - this process is facilitated by the encouraging
and supportive attitude and attention of volunteer staff.
Participants
The children and adolescents enrolled in this study par-
ticipatedinoneofthefiveseparate8-daysessionsof
Bátor Tábor in the summer of 2008. Sessions were not
mixed in terms of presenting conditions. Campers of
the international sessions were not invited to participate.
The medical criterion for children attending the pro-
gram was the diagnosis of childhood cancer or leukae-
mia (treatment completed within 5 years), diab etes
mellitus or JIA. The referring hospitals from all over the
country selected the children for camp with the
approval of the medical director of the Bátor Tábor
Foundation. There were separate sessions for children
(age 7-13) and teenagers (age 13-18) for the oncology

and diabetic camps, and a single session for the JIA
group (age 10-18). Only the age groups of 10-18 years
were involved in the study.
In the summer of 2008 there were 298 Hungarian
campers between age 10 to 18 participating in the thera-
peutic recreation summ er program. Thirty nine per cent
(n = 115) completed the questionnaire bef ore and after
camp. Questionnaires with missing answers were
excluded. Fifty nine of the 115 participants had attended
previous camps. Table 1 shows the demographic charac-
teristics of the study sample.
Measures
We used t he Hungarian version of Kidscreen-52 ques-
tionnaire to assess the HRQoL of children and
adolescents. The question naire consists of 52 items in 10
subscales: Physical Well-being(5 items), Psychological
Well-being (6 items), Moods and Emotions (7 items), Self-
perception (5 items), Autonomy (5 items), Parent
Relations and Home Life (6 items), Financial Resources
(3 it ems), Social S upport and P eers (6 i tems), School
Environment (6 items), Social Acceptance (Bullying)
(3 items). The questionnaire takes 10-15 minutes to fill in.
KIDSCREEN-52 was developed within an international
project ‘Screening and Promotion for HRQoL in Chil-
dren and Adolescents - a European Public Health Per-
spective’ with participation of 13 countries (including
Hungary) [7,33]. In all participating countries, including
Hungary, after piloting the questionnaire, a representa-
tive sample was used to produce normative data. Relia-
bility and validity of KIDSCREEN-52 were proven;

Cronbach alphas for the overall sample (for the 13 parti-
cipated countries) ranged from 0.77 (Social Acceptance,
Bullying) to 0.89 (Financial Resources and Psychological
Well-being). For converg ent and discriminant validity,
there was a small to medium level of correlation with
two other HRQoL measures, The Pediatric Quality of
Life Inventory [34], and the Child Health Illness Profile
- Adolescent Edition [35]. The instrument has cross-cul-
tural applicability, and T-values and percentages avail-
able for each country stratified by age and gender.
Reliability for Cronbach’s Alpha values at T1 ranged
betwee n 0.73 for Self-perception and 0.92 for Psycholo-
gical Well-being and at T2 ranged between 0.74 for
Social Acceptance and 0.92 for Financial Resources.
Procedure
We sent the questionna ires by post and instructed cam-
pers to complete the questionnaire by themselves at
home 8 weeks before and after the camp session they
attended. The introductory letter explained the p urpose
and nature of the study and stressed that campers’
Table 1 Demographic characteristics of study sample
Oncology
sessions
(n = 32)
Diabetes
sessions
(n = 55)
JIA
session
(n = 28)

Whole
sample
(n = 115)
Age
Mean 13.40 13.25 13.43 13.34
SD 2.26 2.18 2.23 2.20
Age group
Younger
than 14
18 31 15 64
Older than
14
14 24 13 51
Gender
Male 15 26 7 48
Female 17 29 21 67
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>Page 3 of 10
decisions to p articipate were entirely voluntary, anon-
ymous, and would not affect their possibility of attend-
ing the camp. Informed consent was obtained from
parents. The requ est also attached a pre-paid addressed
return envelope and a demographic questionnaire that
included additional questions about the campers’ gen-
der, age and prev ious camp experience. A reminder let-
ter was sent to all campers within two weeks. The two
questionnaires completed by the same person were
matched by date of birt h, and served as the only identi-
fying information. The data-keeping administrative per-
son completed the registration of questionnaires. The

design maintained the anonymity of the participants as
the data processors did not have any access to the camp
files. The Board of the B átor Tábor Foundation
approved the study design.
We requested the campers to c omplete the Revised
Illness Perception Questionnaire (IPQ-R) [36] as well,
but the latter is not a subject of this paper.
Control group
We invited children and adolescents not participating in
Bátor Tábor pro gram in 2008 living with the same
chronic diseases and matched f or age to participate as
the members of a control group. We mailed the KIDSC-
REEN-52 and IPQ-R questionnaires, demographic ques-
tionnaire, return envelope, parental informed consent
and an introductory letter explaining the nature of the
study and the need for a control group. We asked physi-
cians or nurses from partner hospitals of Bátor Tábor to
choose control participants from their own database
based on the selection criteria. A physician from the
out-patient clinic stamped and sig ned a letter of
approval and encouragement from the hospital. The
control group returned 114 pre camp (T1) and 25 post
camp (T2) que stionnaires from 367 packages sent out
by 6 infirmar ies. We excluded the data from the control
group due to the very low response rate.
Statistical methods
Statistical analysis used SPSS 15.0, with a signific ance
level o f p < 0.05. Descriptive analyses assesed the mean
and standard deviation of the ten subscales of the
KIDSCREEN-52 questionnaire and the confidence inter-

val (CI: 95%) of means. Cronbach-alphas were calculated
as indexes of internal consistency. Chi-square tests
detected differences of frequencies among groups, and
ANOVA revealed any differences of means of subscales
of KIDSCREEN-52 among groups at T1.
Repeated measures of multivariate analysis of var iance
(MANOVA)) evaluated changes of H RQoL. The depen-
dent variable was the ten subscales of the KIDSCREEN-
52 instrument, and gender, age-group, disease-g roup
were the independent variables. The small cell numbers
permitted interpretation of only two-way interactions.
Morris and DeShon’s [37] equation 8 for within subject
design compared effects size for T1 and T2 scores using
means and standard deviations, and the correlation
between the two means.
Reliable Change Index (RCI) calculated significant
cli nical change [38] by using a subject’ spretest(x
1
)and
posttest score (x
2
), and the standard error of difference
between the two test scores: RC=(x
2
-x
1
)/S
diff.
When RC
is greater than 1.96, the posttest score reflects real

change.
Results
Differences between respondents and non-respondents
We tested the differences between non respondents
(those who had not sent back or had not completed the
second questionnaire) and respondents (those who had
completed the entire questionnaires both times without
missing items). Analysis of variance (ANOVA) and chi-
square procedures examined the differences between the
two groups on the demographic variables of age, gender
and education of mother, on disease group, on previous
camp experiences and on KIDSCREEN scales. There
were no significant differences between the two groups.
Differences by disease group and by earlier participation
in a camping program at T1
WeexaminedthedataatT1bydiseasegroupandby
previous participation in a camping p rogram. ANOVAs
and chi-square test assessed pretest differences
between disease groups on age, on gender, on previous
camp experience and on KIDSCREEN scales’ scores.
Table 2 summarizes the means (standard deviations
and confidence intervals) of all the KIDS CREEN scales
by disease groups at T1 and T2. There was a signifi-
cant difference among disease groups on two KIDSC-
REEN scales: Physical Well-being and Self-perception
scales (F(2, 112) = 5.372, p < 0.01; F(2, 112) = 3.313,
p < 0.05, respectively) at T1. Post hoc analysis indi-
cated that on the Physical Well-being sca le the dia-
betes group (M = 17.84, SD = 3.38) had significantly
higher scores than the oncology and the JIA group (M

=15.81,SD=3.80;M=15.50,SD=3.65,respec-
tively), and the diabetes group had higher scores (M =
19.58; SD = 3.98) on the Self-perception scale than the
JIA group (M = 17.07, SD = 4.96).
Changes in HRQoL
Repeated measures of mixed factor ial MANOVA exam-
ined any changes in children’sHRQoL-2(gender)×2
age group (younger than 14 years old, older than 14
years old) × 3 (disease group: diabetes, oncology, JIA) ×
2 (Time). When multivariate analysis indica ted signifi-
cant results the source of these effects were identified
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>Page 4 of 10
Table 2 Mean scores (Standard Deviation) [Confidence Interval 95%] of KIDSCREEN-52 instrument at T1 and T2 by disease group and for the whole sample
Pre camp Post camp
Subscales
of the KIDSCREEN-52 instrument
Diabetes
Group
n =55
Oncology group
n =32
JIA
Group
n =28
Whole
Sample
n = 115
Diabetes
Group

n =55
Oncology group
n =32
JIA
Group
n =28
Whole
Sample
n = 115
Physical well-being 17.84 (3.38)
[16.92-18.75]
15.81 (3.80)
[14.44-17.18]
15.50 (3.65)
[14.08-16.92]
16.70 (3.70)
[16.02-17.38]
17.53 (3.04)
[16.71-18.35]
16.66 (3.29)
[15.47-17.85]
14.89 (3.96)
[13.35-16.43]
16.64 (3.48)
[16.00-17.28]
Psychological well-being 24.58 (5.01)
[23.23-25.93]
23.97 (4.62)
[22.30-25.64]
23.75 (5.63)

[21.57-25.93]
24.21 (5.04)
[23.29-25.13]
24.91 (4.51)
[23.69-26.13]
24.81 (3.86)
[23.42-26.20]
23.64 (5.19)
[21.63-25.65]
24.57 (4.51)
[23.75-25.39]
Moods & Emotions 29.73(4.17)
[28.60-30.86]
28.53 (5.84)
[26.42-30.64]
28.71 (5.99)
[26.39-31.03]
29.15 (5.13)
[28.21-30.09]
29.56 (4.79)
[28.27-30.85]
29.84 (3.99)
[28.40-31.28]
29.04 (4.80)
[27.18-30.90]
29.51 (4.55)
[28.68-30.34]
Self-Perception 19.58 (3.98)
[18.50-20.66]
18.91 (3.90)

[17.50-20.32]
17.07 (4.96)
[15.15-18.99]
18.78 (4.30)
[17.99-19.57]
20.29 (3.79)
[19.27-21.31]
19.66 (3.39)
[18.44-20.88]
17.75 (4.83)
[15.88-19.62]
19.50 (4.07)
[18.76-20.24]
Autonomy 20.13 (4.50)
[18.91-21.35]
19.88 (4.48)
[18.26-21.50]
19.14 (3.80)
[17,67-20,61]
19.82 (4.31)
[19.03-20.61]
19.76 (3.93)
[18.70-20.82]
18.50 (4.44)
[16.90-20.10]
17.64 (4.47)
[15.91-19.37]
18.90 (4.27)
[18.12-19.68]
Parent Relations & Home Life 24.69 (5.01)

[23.34-26.04]
24.69 (5.40)
[22.74-26.64]
23.25 (4.99)
[21.32-25.18]
24.34 (5.11)
[23.41-25.27]
25.65 (4.43)
[24.45-26.85]
24.66 (4.63)
[22.99-26.33]
23.07 (5.65)
[20.88-25.26]
24.75 (4.88)
[23.86-25.64]
Financial Rresources 10.93 (3.80)
[9.90-11.96]
11.44 (3.23)
[10.28-12.60]
10.96 (3.84)
[9.47-12.45]
11.08 (3.64)
[10.41-11.75]
11.82 (3.09)
[10.98-12.66]
11.16 (3.19)
[10.01-12.31]
10.50 (3.85)
[9.01-11.99]
11.31 (3.33)

[10.70-11.92]
Social Support & Peers 24.80 (5.07)
[23.43-26.17]
22.69 (5.47)
[20.72-24.66]
24.36 (5.09)
[22.39-26.33]
24.10 (5.22)
[23.15-25.05]
25.36 (4.42)
[24.17-26.55]
21.53 (5.74)
[19.46-23.60]
23.00 (5.75)
[20.77-25.23]
23.72 (5.37)
[22.74-24.70]
School environment 21.15 (6.00)
[19.53-22.77]
21.13 (5.17)
[19.27-22.99]
20.54 (5.71)
[18.33-22.75]
20.99 (5.67)
[19.95-22.03]
22.13 (5.47)
[20.65-23.61]
21.72 (4.22)
[20.20-23.24]
21.29 (4.84)

[19.41-23.17]
21.81 (4.97)
[20.90-22.72]
Social Acceptance (Bullying) 13.91 (1.96)
[13.38-14.44]
13.53 (2.26)
[12.72-14.34]
13.29 (2.54)
[12.31-14.27]
13.65 (2.19)
[13.25-14.05]
14.20 (1.65)
[13.75-14.65]
13.47 (1.98)
[12.76-14.18]
13.39 (1.97)
[12.63-14.15]
13.80 (1.85)
[13.46-14.14]
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
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through univariate analysis. Onl y two-way interaction s
were interpreted.
There was a significant main effect for Time, F(10, 94)
= 3.284, p < 0.01. Univari ate analysis found Self-percep-
tion scores to change by Time, F(1, 103) = 6.343, p <
0.05. The scores increased slightly from Time 1 (M =
18.78, SD = 4.30, CI: 17.99-19.57) t o Time 2 (M =
19.50, SD = 4.07, CI: 18.76-20.24). Autonomy scores
changed by Time, F (1, 103) = 6.521, p < 0.05; these

scores decreased from Time 1 (M = 1 9.82, SD = 4.31,
CI: 19.03-20.61) to Time 2 (M = 18.90, SD = 4.27, CI:
18.12-19.68). School Environment scores also changed
by Time, F( 1, 103) = 6.554, p < 0.05; scores of this scale
increased from Time 1 (M = 20.99, SD = 5.67, CI:
19.95-22.03) to Time 2 (21.81, SD = 4.97, CI: 20.90-
22.72). Effect sizes were small for Self-perce ption and
for Autonomy scales (0.22 and 0.23), respectively, and
effect size for School Environment was negligible (0.16)
(Table 2).
Significant Time × Gender interaction for Psychologi-
cal Well-being scale scores was found, F(1, 103) = 4.054
p < 0.05; male scores increased from Time 1 (M =
24.08, SD = 4.95, CI:22.64 -25.52) to Time 2 (M = 25.02,
SD = 4.08, CI: 23.84-26.20), and effect size was small
(0.21). Female scores did not change from Time 1 (M =
24.30, SD = 5.13, CI: 23.07-25.53) to Time 2 (24.25, SD
= 4.80, CI: 23.10-25.40).
Significant Time × Age group interaction was found
for Autonomy, Parent Relation and School Environment
scales’ scores (F(1, 103) = 6 .061 p < 0.05 ; F(1, 103) =
5.414, p < 0.05; F(1, 103) = 4.520, p < 0.05, respectively).
Autonomy scores for children under 14 years old (N =
64) decreased from Time 1 (M = 20.64, SD = 3.64, CI:
19.75-21.53) to Time 2 (18.78, SD = 4.18, CI: 17.76-
19.80), and effect size was moderate (0.52). Autonomy
scores for children older than 14 years old (N = 51) did
not change from Time 1 (M = 18.78, SD = 4.88, CI:
17.41-20.15) to Time 2 (19.04; SD = 4.42, CI: 17.80-
20.28).

Parent Relation scores for younger children did not
change from Time 1 (M = 25.66, SD = 3.93, CI: 24.70-
26.62) to Time 2 (25.61, SD = 4.10, CI: 24.61-26.61),
while for older children scores increased from Time 1
(M = 22.69, SD = 5.92, CI: 21.02-24.36) to Time 2 (M =
23.67, SD = 5.55, CI: 22.11-25.23), and effect size was
small (0.20).
Scho ol Environment scores for young er children from
Time 1 (M = 22.02, SD = 5.42, CI: 20.69-23.35) did not
change to Time 2 (22.20; SD = 4.91, CI: 21.00-23.40),
while for older children scores increased from Time 1
(M = 19.71; SD = 5.75, CI: 18.09-21.33) to Time 2 (M =
21.31; SD = 5.05, CI: 19.89-22.73), and effect size was
small (0.26).
Clinically significant changes - Reliable Change Index
ReliableChangeIndex(RCI)[38] was calculated for all
the 10 subscales in order to detect clinically signifi cant
changes in our study. According to our results 32 chil-
dren (27.8%) showed clinically significant improv ement
(RC > 1.96) on at l east one subscale of KIDSCREEN-52
instrument. Specifically, we found that scores of 17 chil-
dren increased on one scale, scores of 10 children
improved on two scales, 3 children showed improve-
ment on three subscales, scores of 1 child increased on
four scales and scores of 1 child on six scales.
Discussion
We can conclude in general from comparison of the pre
camp and post camp scores that participation in the
therapeutic recreation camping program of Bátor Tábor
has significant positive effects. The repeated measure

mixed factorial MANOVA sh owed a significant main
effect for time. Clinically significant changes were
detected in a remarkable proportion (27.8%) of children
and adolescents on at least one subscale of the KIDSC-
REEN-52 instrument. These positive changes were inde-
pendent of the type of disease, age, gender, and previous
camp experience. This study demonstrated that su mmer
camps in Bátor Tábor for children and adolescents with
chronic illnesses could be beneficial in helping to
improve campers’ HRQoL. In the following sections we
will discuss our findings regarding significant change s
on subscales separately and consecutively.
Self-perception
Self-perception turned out to be one of the subscales of
the KIDSCREEN-52 instrument which showed signifi-
cant posi tive change from T1 to T2, although the effect
size was found to be small. These results indicate that
campers benefit from the therapeutic recreation pro-
gram in a very important area. Adolescents experiencing
cancer often have low self-concept [39], whereas positive
self-concept is generally associated with increased cop-
ing abilities [40]. Therefore reinforcement of self-per-
ception, self-esteem and self-efficacy as part of an
overall physical and psychosocial rehabilitation is a
major goal of therapeutic recreation programs [30] as
well as adventure therapy [41]. These current results
correspond to the previous research at Bátor Tábor
demonstrating significant positive changes in the self-
esteem and self-efficacy of adol escents living with dia-
betes and cancer [42].

Autonomy
Time related decline as well as significant time and age
group interaction was found regarding Autonomy
scores: children below 14 years of age showed significant
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>Page 6 of 10
moderate effect size decrease on the Autonomy subscale
whereas children older than 14 did not show any
change. Autonomy refers to the child’soradolescent’ s
freedom of choice, self-sufficiency and independence,
the extent to which the child/adolesc ent feels able to
shape his/her own life as well as being able to make
decisions about day-to-day activities [7]. No publications
were found on longitudinal changes in autonomy as an
outcome result of therapeutic interventions. Studies
assessing autonomy as part of the HRQoL of survivors
of childhood cancer, in general, reported inconsistent
results. The HRQoL of child and adolescent retinoblas-
toma survivors were found to be higher on Autonomy
subscales compared to the population based reference
group of the coun try in the Netherlands [43 ]. However,
there are publications suggesting just the opposite -
assuming that living with a chronic condition is asso-
ciated with increased dependency and lower level of
autonomy [44,45].
Wysocki et al found that the group of children with
excessive self-care autonomy demonstrated less favor-
able treatment adherence, diabetes knowledge, hospitali-
zation rates, and glycemic control. They emphasize that
children’s self-care autonomy has to be balanced with

their psychological maturity, and suggest t hat families
who succeed in maintaining parental involvement in
diabetes management may have better outcomes [46].
In our study the changes in Autonomy scores in the
lower age group (below 14 years) are considered note-
worthy. Coping with the stress of having a chronic ill-
ness, understanding the disease itself, as well as dealing
with its possible outcomes and long-term sequelae, and
being involved in the tough c ourse of decision making,
reinforces the early maturation of t hese children and
may be connected to enhanced level of autonomy.
We interpret our result in keeping with one of our
camper’ s words on his experiences at camp: “Bátor
Tábor is a place where all the positive energies pre-
viously having been taken away by the disease are
recharged.” The environment providing continuous care
and supervision by trained counselors, as well as the
challeng ing programs and fun and joy experienced
together with peers, seems to make up for what these
chronically sick children (especially in the lower age
group) have missed out on due to their disease. The
decrease in autonomy especially in the younger age-
group can be considered as a beneficial outcome of the
therapeutic recreation program and noteworthy enough
for further research in the future.
Gender and age-group differences
Further statistical evaluation revea led a significant time
and gender interaction in our study. Psychological Well-
being showed improvement in boys, whereas Parental
Relationships and School Environment subscales showed

positive changes in adolescents over 14 years of age.
The School Envir onment subscale expl ores an evalua-
tion of being at school and a perception of cognitive
capacity. Successful school experiences contribute to
feeling of normality among adolescents suffering from
chronic conditions [47].
Quality of interaction with parents in our study was
an outcome measure, and we found a significant
improvement among adolescents over 14 years of age.
This result can be important in light of the consistent
body of evidence supporting that the parent-child com-
munication or quality of interaction is associated with
disease outcomes, e.g. in diabetes [48,49]. Future studies
should focus on the prospective relationship between
improvement of quality of parent-child interaction and
illness management.
Comparison of disease groups
Further evaluation of pre camp questionnaires (T1 data)
enabled us to get information on the differences
between the examined disease groups in relation to
HRQoL. Children with diabetes were found to show
higher scores on the Physical Well-being subscale com-
pared to that of children with cancer or JIA. As com-
pared to the JIA group the Self-perception of children
with diabetes also proved to be higher. Our explanation
of these findings is related to the fact t hat chronically
sick children and adolescents are challenged in different
ways in their e veryday life due to the divergent charac-
teristicsofsymptomsandthecourseofthedisease.
After the implementation of proper treatment and edu-

cation on leading their life with continuous control of
their carbohydrate metabolism and blood s ugar level
children with diabetes are more or less free of symp-
tom s and pain whereas chil dren with cancer experience
a great deal of pain and suffering due to the symptoms
of the disease as well as the treatment based on che-
motherapy, irradiation and surgery. Children with JIA
suffer a remitting and flaring course of considerable
pain and fatigue, stiffness and disability [50]. These
characteristic differences correlate well with our data.
Limitations of the study
Several limitations of the study should be noted. The
inclusion of a control group would have considerably
strengthened casual inferences. The questionnai res were
filled in an uncontrolled environment (campers’ home)
that varied from child to child and is a potential bias in
our results. In addition, neither the time of diagnosis
nor the age at diagnosis were considered.
There a re studies demonstrating that HRQoL is
dependent on the progress of the illness. In a prospec-
tive study differences between adolescent cancer patients
Békési et al. Health and Quality of Life Outcomes 2011, 9:43
/>Page 7 of 10
and healthy controls gradually disappeared and then
reversed resulting in the cancer group reporting signifi-
cantly better HRQoL and lower levels of anxiety and
depression than the referen ce group a year and a half
from diagnosis [51].
There was lack of information on family socio-demo-
graphic characteristics, and life events (e.g. loss of a sig-

nificant person), which were consequently not
controlled for between the pre and post camp adminis-
tration of the questionnaires in our study.
Another limitation of the study is that the design can-
not account for possible specific components of thera-
peutic recreation contributing to t he positive outcom e.
Nevertheless, the results show notable psychological
benefit associated with camp participation, despite the
absence of spe cific and st ructured psychologica l
interventions.
Conclusions
The present study assessed the changes of H RQoL of
children and adolescents with chronic illnesses as a
result of parti cipation in a therapeutic recreation camp-
ing program. The program proved to have a positive
impact on the HRQoL of children and adolescents living
with cancer, diabetes and JIA, especially enhancing their
self-perception and reducing the autonomy of children
less then 14 years of age.
The novelties of this study are the use of the KIDSC-
REEN-52 questionnaire to measure outcome effective-
ness of a psychosocial rehabilitation program and
assessing and comparing the HRQoL of children living
with cancer (excluding diabetes mellitus and JIA).
In our experience the KIDSCREEN-52 questionnaire
proved to be an appropriate tool to measure HRQoL of
children and adolescents living with cancer, diabetes
and JIA, as well as measuring effectiveness of a thera-
peutic recreational camping program.
The comparison of HRQoL among a larger group of

children and adolescents living with different chronic
conditions would provide further data useful for inform-
ing future program designs. The aim is to achieve long-
lasting positive changes in the HRQoL of chronically ill
children and adolesce nts through therapeutic recreation
rehabilitation programs precisely adjusted to the differ-
ent needs arising from the varying psychosocial
demands caused by dissimilar diseases.
Future directions
This report and our previous study [42] prove that par-
ticipation in the camping program in Bátor Tábor has
an impact on self-evaluation. Further research is
required to clarify which component of self-eva luation
changes are due to therapeutic recreation (e.g. self-
acceptance, contingent self-esteem).
There was a positive change found in parent-child
relationship. Adolescents’ HRQoL is influenced by the
broader social context (family, peers) and extensive
research shows a complex and bidirectional relation-
ship among social factors (e.g. social support, satisfac-
tion with support) and chronic conditions in youth.
Changes in self-esteem and relationship with parents
may be related to each other. A more positive self-
schema may lead to improvement in relationships,
whereas better relationships may strengthen self-
esteem. Detection of this dynamic relationship between
psychological and social variables requires more fol-
low-up studies.
There is a plan to incorporate the presentation of the
results of the study into the training of camp volunteer

staff in order to raise their awareness of how HRQoL of
chronically sick children can be influenced by the rapeu-
tic recreation as well as to call their attention to the
importance of their role in the therapy.
List of abbreviations used
ANOVA: Analysis of Variance; CI: Confidence Interval; HRQoL: Health-Related
Quality of Life; IPQ-R: Revised Illness Perception Questionnaire; JIA: Juvenile
Immune Arthritis (rheumatoid arthritis); M: Mean; MANOVA: Multivariate
Analysis of Variance; RCI: Reliable Change Index; SD: Standard Deviation.
Acknowledgements
We are grateful for Zsuzsanna Matula and Krisztina Soóki for their generous
help in the administrative back-up of the study. We are thankful to Peter
Kearney for revising the manuscript.
Author details
1
Bátor Tábor Foundation, Budapest, Hungary.
2
Semmelweis University,
Institute of Mental Health, Budapest, Hungary.
3
Eötvös Loránd University,
Faculty of Education and Psychology, Personality and Health Psychology
Department, Budapest, Hungary.
4
National Institute of Child Health,
Budapest, Hungary.
5
Semmelweis University, 2
nd
Department of Pediatrics,

Budapest, Hungary.
6
University Clinic Hamburg-Eppendorf, Department of
Psychosomatics in Children and Adolescents, Hamburg, Germany.
Authors’ contributions
AB, ST, GK, IB, AS and GT designed the study protocol. AB, IB and GT
organized and carried out the acquisition of data. GK performed the
statistical analysis. AB and ST made major contributions to interpretation of
data. GK, IB and AS have been involved in revising the manuscript. All
authors read and approved the final manuscript.
Competing interests
The authors declare that they have no competing interests.
Received: 6 October 2010 Accepted: 14 June 2011
Published: 14 June 2011
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Cite this article as: Békési et al.: Health-related quali ty of life changes of
children and adolescents with chronic disease after participation in
therapeutic recreation camping program. Health and Quality of Life
Outcomes 2011 9:43.
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